I have been blessed with multiple medical conditions. All are complex, progressive, rare and now terminal.!They affect my entire body. I have a genetic condition called CAPS specifically Muckle-Wells only affecting 1 in a million. CAPS has a spectrum of syndromes and I have characteristics of all syndromes due to inheriting a double mutation. In addition I have high blood pressure, dysautonomia, small nerve fiber neuropathy, malrotation(different anatomy) of my GI track, chronic duodenal intussusception (the bowel obstruction cannot be removed due to the location) complete GI failure due to nerve damage and inflammation, pancreatic dysfunction and the inability to absorb nutrition or medication via my GI track. I am dependent 24/7 on TPN (Nutrition infused into the bloodstream through a port or central IV line). My body cannot produce nor maintain its own blood sugar without the help of TPN or IV dextrose. My disease has progressed to terminal due to what doctor's believe is a result of amyloidosis. These are proteins deposits that attach to tissue and all other organs. As a result the organs and tissues break down over time. We don't know how much longer I have to live, but we do know one day I will be in heaven. Tube free, pain free and able to eat again! To learn more about CAPS please go to nomidalliance.org.
Thank you for taking the time to share in my journey as God's plans for me and the wonders of his love unfolds! Much Love!
"God's voice is glorious even in the thunder. We cannot even imagine his greatness." (Job 37:5)
Don't worry about anything but pray about everything (Philippians 4:6)
Pure Heart Testimony Video https://youtu.be/0ZsHBE6RTV0